Transposition of the Great Arteries and Coarctation of the Aorta - Sienna's Story

Despite being scanned several times in pregnancy, Sienna’s heart defects were not detected until after she was born, when she became dangerously ill. Here her mum, Kirsty, shares their story:

When I was pregnant with Sienna, I had numerous scans because there was a high amount of fluid around the baby. The midwife checked my baby’s heartbeat and noticed it always jumped around, however she put this down to Sienna being an active baby.

I had Sienna by an elective c-section at 39 weeks. When the doctors came to examine her, they couldn’t check her heart because she was crying so much. We left the hospital and went home with a seemingly healthy baby.

I was breastfeeding Sienna and, for the first two days, everything went well. But then she just stopped latching on. I became increasingly concerned about her breathing, which was fast and rapid. I mentioned this to the midwife, who told me it was normal for a newborn. However, something just didn’t feel right to me.

When Sienna was one week old, she went a whole day without feeding. That night she was groggy and wouldn’t settle. The next morning, I called the midwife because I knew something wasn’t right. She said, if I was worried, I should take Sienna to see the GP.

I was offered an afternoon appointment, but I insisted on being seen sooner. The GP checked Sienna’s tummy, said there was nothing wrong with her and asked if I was feeding her properly. I was completely shocked. She didn’t check her temperature or her SATS. She just told me to see the health visitor to check the way I was feeding.

I was still really concerned, so I took Sienna to the midwife clinic. By that point, Sienna had turned grey. The midwife checked her heart rate and it was going really fast, so she called an ambulance.

The paramedics did a pulse oximetry test on Sienna and her SATS were very low, so we were blue-lighted to hospital. There, Sienna was given oxygen and stabilised.

After two hours, a doctor came to see me and said that Sienna had a heart condition. I just assumed it would be a hole in the heart, because I’d never heard of any other kinds of heart defects. However, it turned out that Sienna had Transposition of the Great Arteries and Coarctation of the Aorta. She was transferred to a bigger hospital to have a balloon septostomy.

At sixteen days old, Sienna had her open heart surgery and one week later, we were allowed to bring her home.
I am still in shock when I think about what happened. It’s something you can’t imagine anyone going through and yet it happened to us. I was so unprepared.

Sienna is now three years old and doing really well. She’s meeting every milestone and goes to pre-school. She has check-ups every year and is aware of her scar. Sometimes says she wishes it wasn’t there, but we’ve been told it should fade as she grows.

I later complained to our GPs surgery. The doctor who dismissed my concerns apologised and acknowledged that she hadn’t followed protocol. I can’t bear to think what may have happened if I’d listened to the GP instead of following my instincts. I know how lucky we are to have Sienna with us.

Had Sienna’s heart defects been diagnosed during one of my many pregnancy scans, things would have been so different. We would have had the chance to learn about her conditions and be fully prepared for her arrival. She would have had the medical care she needed as soon as she arrived. Instead, she became dangerously ill before she received a diagnosis. That’s why the early detection of heart defects is so vital.